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IgA Nephropathy (IgAN)

Bria G.

Children

In 2020, just before the world was turned upside down by the COVID-19 pandemic, Bria was diagnosed with Henoch Schoenlein Purpura (HSP). Her family was told that HSP would only last 4 weeks, and Bria would no longer have to suffer. HSP quickly turned into IgA nephropathy (IGAN). Becca, Bria’s mother, has since lost count of how many doctors they have seen as well as medical visits they’ve been to in the last three years. Bria has had to endure numerous hospitalizations, needle pokes, sleepless nights and a very difficult emotional rollercoaster.

Fortunately, Bria and her family have met a community of IGAN warriors and continue to learn so much more about not only her disease but also about kidney disease in general. Bria has experienced many ups and downs regarding her care including losing doctors, having to transfer care, and various other plights…

Currently, Bria appears to be more “herself” -she has her hair, she’s smiling and laughs once again. However, there are indeed parts of her that most don’t see— her crying, struggling emotionally, and enduring being pricked and poked like a pin cushion.

Furthermore, Bria and her family live in New Mexico and it has been very difficult to ensure her access to doctors who specialize in pediatric nephrology. Becca has educated herself regarding IGAN by spending many sleepless nights digging deep into research rabbit holes. Due to this, she has found answers by asking a ton of questions as well as advocating for Bria non-stop. The IGAN foundation has led Becca to many other resources, which has resulted in her educating the remainder of her family regarding Bria’s health struggles with IGAN.

Currently, Bria appears to be more “herself” -she has her hair, she’s smiling and laughs once again. However, there are indeed parts of her that most don’t see— her crying, struggling emotionally, and enduring being pricked and poked like a pin cushion. Bria has had to change her whole lifestyle. For instance, now only eating foods with many restrictions and limiting what she can drink at the young age of 13. IGAN has transformed a sweet girl into a warrior. Bria makes her whole family push through and continue to strive when they have tough days. Becca wants to continue to fight for Bria and continue to be her biggest cheerleader as well as she wants to educate as many as possible about IGAN.

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Related Resources

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Living with IgA Nephropathy: The Personal Stories of Four Rare Kidney Disease Patients

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Fireside Chat with NORD on the IgAN Patient Assistance Program

Fact Sheet

IgA Nephropathy (IgAN)

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